My RA and SS Journey

[Note: If you want to read only about SS, scroll down.]

Preface and disclaimer.

My intent is not to seek sympathy, admiration for being "brave" or to scare anyone. However, some things about my journey may freak you out and be very scary...but that's how it is whether you read it here or elsewhere. There are some serious possibilities. But...

Please remember:

    * Not everyone will have RA to the same extent. There are mild, moderate and severe cases.
    * Not all cases of RA "present" the same way
    * Not every day is a bad day - I have FAR more good days than bad!
    * Every day new treatments are on the market.
    * If you were just recently diagnosed you have a much better chance of not experiencing all of the complications I have, or the deformities, because there are drugs out now that weren't out 30, 20 or even ten years ago...

My Life with RA
(Rheumatoid Arthritis)

I’ve had RA since about 1980 when I was in my mid to late 30's while raising 3 children young children. It began with swollen fingers. I tried to convince myself my rings no longer fit because my hands were swelling because of the summer heat. Then both feet began to hurt and I had to stop jogging. When I began waking up with very stiff hands I began researching and was certain I had RA, but was afraid to see a doctor because the books I read at that time said it was treated with steroids and I did not want to take them.

I remember sitting with a pile of books about natural healing that all said not to see a doctor and take the arthritis medicines and another pile of books by doctors saying if you try natural cures you'll wind up a cripple in a wheel chair. I cried. Then I went to see a nutritionist. I tried eliminating night shades (tomatoes, potatoes, eggplant). I did in fact wind up needing to use a wheelchair when at an amusement park.

I was eventually lucky enough to find an integrative Rheumatologist who later went to China to study acupuncture and is always able to advise me what natural methods are worth trying and would ot be harmful.

Back then, the theory was the reverse of the current one. They treated very conservatively, so I started out on NSAIDS (Non steroidal anti-inflammatories).


My first R.A. related hand surgery was 7/1/86. A synovectomy of my right hand mp joints and thumb, and removal of an RA nodule on my wrist. I went straight from the hospital to my annual July 4th camp-out.

On 9/15/93, I had a bone spur removed from my left wrist to prevent tendon rupture.

Unfortunately, it didn’t work. The tendons ruptured and I lost the use of two fingers: pinky and ring. They just flopped down uselessly.

On 12/13/93 I had tendon transfer surgery on my left hand. It restored SOME use of the fingers.

On 1/7/97 I had a tendon synovectomy on my middle and ring fingers on my right hand. Each of these hand surgeries kept me in a cast up to six weeks and was then followed by intensive physical therapy. I learned it’s much easier to do surgeries like this in the summer - less clothing to put on and off
Never one to let anything slow me down from a good party, above/left is a photo of me attending a holiday party with my cast wrapped in a black lace sling.

All the surgeries did nothing to prevent the swaying of my fingers - ulna deviation. Jan, 2008, this is what my hands look like.

My left hand 2007 or 08 puffy from a flare (above)

My left hand in 2010. My fingers appear to be flat with the topside of my hand, but that's only because I have laid them down and am pushing them to be. In my natural state they are curled under in a half fist:

Here, you can see my right hand. Knuckles enlarged, as is my wrist bone, which has some small nodules on it.
 My hands in June, 2010 above and below.

Christmas 2010. Close up of my hand on my lap (right)

It is interesting, however, to see the below photo of me taken in 2005. Note that as of that date, my right hand was almost perfect and unaffected by ulnar drift. My left hand drifted over decades and my right went very fast. They are now a matched set! It is difficult to do some things, like hold a cup without an ear. In 2011 I experienced sharp nerve pain in my MP joints and pursued having joint replacement in my hands.  I found that very few hand specialists have any experience in the surgery as few people today get these hand deformities because of better medications today.  The pain subsided and several surgeons told me if I wasn't in pain not to put myself the surgery and very long post surgical rehab with my hand unusable for a long time - very difficult living alone. So i have not.


My left knee had been bad for quite a while. I walked with a limp and could not fully bend or straighten it. I had difficulty getting in and out of my bath tub to shower, and difficulty getting in and out of the car.  But I was in my 40s and the doctors kept telling me I was too young for a replacement. They said to wait until the pain got worse. I waited until it got to the point I could not get up from the toilet seat.

Then, in 2003 when I was ready to have the surgery, I went into a bad flare.  I was hospitalized with pleural effusion (fluid in the lining of the lungs) and a partially collapsed lung.  The liter and a half of fluid took a week to be drained slowly. The fluid was tested and came back RA.

May 21, 2003 I had total left knee replacement. It's a quite serious surgery requiring blood transfusion and a week to ten days in-patient rehab. But I recovered very well. You can see the scar in the photo below - holding my grandson April, 2005.

March 29, 2006 – right elbow radial incision and synovectomy surgery. It had been very painful to rotate my right arm.

The most challenging thing about having a chronic illness is having good days and bad days which makes planning difficult. RA also creates a great deal of fatigue! It can causes some worry that people might think you are slacking. One never knows what each morning will bring, and it is hard to balance getting the supportive caring you need with not being pitied. I require more sleep than the average person, but I always did. I tire a bit more easily than many and cannot stand or walk for more than an hour or two at a time without ankle pain. For me the amount of sleep I get is the biggest factor, other than medication, in how I feel - far more than the weather or any food.

Pain is different in each joint. Sometimes it's like walking on a broken ankle, or a sprained knee. In my shoulders, it's like bursitis. In my neck: a really bad stiff neck. Combined with fatigue.

FLARE-UPS: During a flare-up every inch of my body hurts very badly. It feels like a being run over by a tractor-trailer or having been beaten up by thugs with bats. Extremely difficult to get out of bed, to get dressed, and do personal hygiene. Every joint, muscle, and tendons in between the joints HURT. I feel feverish and chilled and have at times run a fever. Doctor's have told me I have a high pain tolerance from decades of chronic pain. But in a flare-up, the pain is very intense to intolerable and makes me want to not go on.

I have worn AFO knee-high braces on both legs since 2006 for ankle support. On my right foot it is preventing a damaged tendon from rupturing and causing drop foot. On my left, it is fusing my ankle without surgery.

Other than that, I’m fully functional...when my meds are working and I am not in a flare!

Even with the braces, I developed a Posterior Tibial Tendon Rupture - it's the tendon that holds up the arch and its rupture causes adult onset flatfoot and was painful until I got an extra arch support put in. I can walk very briefly without them till it hurts.

I have been on: Ecotrin, Motrin, Naprosin, Clinerol, Feldine, Auranofin (Ridura), Depen, Penicilimine, Methotrexate, (Meth. Pen. & Depen), Voltarin, Plaquinel, Methotrexate by injection; Voltarin, Azulfadine, Mychrosine injections (gold), Aurlate (gold) 50mg/wk, Cortisone injection, Imuran, Arava, Oruvail, Prozac, Bextra, Kineret injections, Mobic, Enbrel, Humira and Prednisone as needed. On Jan 8, 2009 I started Orenica transfusions.

All have side effects which have to be weighed.

Yet - I keyboard using two fingers; I use an ergonomic mouse and keep my whole arm supported, and I can still knit and crochet!

              I am more than my tears and more than my pain
              I am more than my fears and more than my shame
              I am more than this body that keeps growing old
              I am pure and I am  hope I am love I am SOUL

Silver Linings:

    * I never get colds or flues because my immune system is so "over" active!
    * chronic pain makes you thankful and appreciative for the days you feel "normal"...and,
    * grateful it's nothing worse still, cause there are lots of things that are! 

Things I'm grateful for:

    * I'm thankful I never learned to play guitar or piano or just about any musical instrument, cause it would be rough not to anymore
    * I'm glad I can still crochet, knit, type and write with a pen or pencil
    * Glad I was never a Trekki cause making that hand sign would be impossible
    * Glad no one I know is deaf and signs cause I'd have to write everything down
    * I'm so grateful to all the wonderful people I have met online for their hugs and support
    * I'm actually glad to have a chronic illness and have some lousy days, cause it really does make you appreciate a pain-free day. They're like a bright sunny day that's not to hot, you don’t have to go to school or to work, and can just play all day and eat ice cream, with not a care about gaining an ounce!
    * And I'm grateful for the meds!

Funniest RA Moment:

    * I met my boyfriend at a restaurant and when we were living in separate cars, as we had come, I threw him a kiss a goodbye.  He called and asked me why I gave him the finger. I try to remember not to point to what I want!

I also now have secondary Sjogren's Syndrome, common in people with RA.

I became aware of dry mouth fairly suddenly. The summer of 2009 I got sick with what turned out to be recurring sinus infections. At the same time my mouth became dry as cotton. I immediately asked my rheumatologist if it was any of my meds causing dry mouth. He said it might be SS and gave me a blood test which came back negative but he also gave me the name of a SS specialist at Penn Medical. He also thought it might be thrush, a fungus infection and we treated that.

Even my beloved and excellent rheumatologist did not seem aware that it could be SS with a negative blood test, but at least he knew where to send me, and I am very grateful.

In the meantime, I saw two different ENTs, one of whom had me scheduled for sinus surgery. But both ENTs seemed quite nonchalant or simply shrugged off my dry mouth so all the while I kept researching dry mouth.  I visited a taste and smell center at Penn Univ. Hospital. Waste of a day. My dry mouth was getting worse. The ENT had me using a Neli-Med nasal irrigator and that helped and eventually after multiple doses of antibiotics, my sinus infections cleared and I cancelled the scheduled sinus surgery.

I had scheduled an appointment at the SS Center at Penn Med and finally got in to see a doctor there who said, no doubt it is secondary SS given my symptoms and the fact that I have RA. He suggested some treatments, prescribed Evoxac and suggested I see their eye doctor even though I had no eye symptoms I was aware of.  

I travelled again to PA to see the eye doctor as no local eye doctor - including specialty centers that treat retina issues - knew anything about SS! The eye tests indicated I had dry eye though I was not aware of it. I was told that without eye drops the damage to my corneas would continue.

Now that I am using the Refresh tears my eyes feel much better. I ignored symptoms, racking them up to eye strain from overuse of the computer. Now my eyes burn and tire less, I am not constantly needing to wipe dried up "stuff" from the corners of my eyes, and even my under eye redness had dissipated! In retrospect, I also had bloodshot eyes.

I am very fortunate to be able to travel to a major  SS center.  I was diagnosed within one year!  The average time is 7-10 years. It is still beyond me that ENTs know nothing about SS.  My GYN diagnosed dryness, a dermatologist told me years ago I had very dry skin...but none ever mentioned the possibility if SS and probably don't know about it.  The only one who was knowledgeable was my dentist who gave me product samples (see "SS Treatments" tab for a list of [products).

I lost 35+ pounds that first year - prior to diagnosis - because all I was able to eat is liquid protein drinks and soup, fruit and veggies. And ice cream! YUM.  The slightest bit of spice makes my mouth burn for a long time after.

My eyes have been tested as dry and I use eye drops to prevent erosion of the cornea. My eyes never bothered me. Now that I am using the Refresh tears my eyes feel much better. I ignored symptoms, racking them up to eye strain from overuse of the computer.Now my eyes burn and tire less, I am not constantly needing to wipe dried up "stuff" from the corners of my eyes, and even my under eye redness had dissipated!

I am on Evoxac. I use Biotene toothpaste and mouthwash.  I use mouth sprays, chew Spry gum
and sip water.  I also use Refresh eye drops 3x day and pellets at night.

I had a salivary gland scan Oct. 2010. FINDINGS: Head and neck scintigraphic images demonstrate markedly decreased tracer uptake by parotid and submandibular glands. Spontaneous and stimulated discharge from both parotid and submandibular glands cannot be evaluated due to significantly
decreased tracer uptake. These findings may represent Sjogren's disease.

Normal tracer uptake by thyroid gland is noted.

1. Markedly decreased uptake by both parotid and submandibular glands, which may represent Sjogren's disease.
2. The uptake scores are 4444, while the discharge scores are 5555.

Doctor's interpretation: "Very severe damage" to all 4 of my salivary glands. I am  producing virtually no saliva, even when induced with a lemon drop (which they give you during the test). The good news is the doctor said it will not get worse and the Evoxac is helping!

Sjorgren's Syndrome has been a major life-altering ailment in terms of eating which is a major part of anyone's life and most socializing revolves around eating.  It is also a serious disease which can lead to lymphoma. Medical knowledge of it is woefully lagging.